Personal life and changes to the home for people with rheumatoid arthritis

Several people had had the disease from childhood and said that living with rheumatoid arthritis can sometimes present challenges with regard to going to school, studying, taking exams and so forth. One experience that they often referred to was that at times they could not play with other children and had spent weeks in hospital. One woman, diagnosed when she was nine, said that even though she had had a home tutor, her studies had been seriously affected. Another woman's illness as a teenager had affected her psychologically as well as physically. A 25 years old woman said that seeing a psychology in her teens helped her understand her situation and work through her problems.

And then just as I came into my teens, it started to get worse progressively, which is probably the worse time for it to get worse. They tried just about every drug that I think it was possible for them to try including some that upset my stomach and one I took made my eyelashes and my eyebrows fall out and my hair as well. And just progressively got worse and worse and obviously it affected me psychologically a great deal. Your teenage years are not a time, generally, when you feel very comfortable in your own skin, but for me it was a lot worse and that combined with the illness, I sort of progressed, as time went on stopped going to school. I had to have home tuition for my education.

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Profile Info

Age at interview:

21

Sex:

Female

Age at diagnosis:

12

Background:

Student, single, no children. Lives at home with mother.

Yeah, it has in, I went through a very I think, I've already mentioned quite a negative phase, I suppose I would say. I think, 'cos I used to feel depressed but would people would say, you know, “You can't be depressed when you're, you know, 13, 14 years old”. Which I suppose is true but in another sense, you know, when you've got, when you're, you've got a year and a half off school because of this neck pain that won't go away I don't know what else you would call it if it's not depression. I used to feel quite negative and I used to you do go through the period where you question why and you still, I always get it sometimes, I get one of those days where, it's usually that little thing, that one little thing that pushes you over and it'll be something like, you're getting something out of the fridge and you'll drop it and that will just be the last thing that you can bear to put up with and then you sort of, I tend to just flop [Laughs] against the wall or sit down. And I went through that for quite a long time I think. Probably all the way through secondary school I felt quite oh, it's difficult to really describe it. You feel, I suppose quite bruised in a way and you feel like you're just getting knocked about by the disease one way or another. It's, there's always something, there's always a joint that hurts. You get rid of, I got rid of my hip problem and then my left knee started to hurt and it's it feels like it bounces from one part to another and when, when you don't have anything else to focus on, I'm one of those people that have to have something else to focus on, and, which I didn't in secondary school because really you're not thinking about career at that age, you're just, you're supposed to be having fun and, and growing up and I wasn't. I didn't feel that I was really doing that, I felt like I'd already grown up because I had to grow up quite quickly and deal with doctors and injections and the possibility of operations and the whole hospital thing. And grow up in the sense that I had to look after my body. I couldn't, I can't be spontaneous, I have to have tablets with me every night and you lose those things, so you grow up quite quickly. And I felt that in between that growing up time and actually the time that I was allowed to be an adult I didn't have much else to do, much else to think about and it, and it does get you down quite a bit. And even though you're with your friends sometimes and you, you're having a good time I've always felt like they, they can see you with your arthritis but the way they deal with it is, I should imagine this is how I deal with things, they go home and then they, they focus on something else and they forget about it. And I know that they love me, you know, they're my family and my parents and my friends but then they forget about it. But I come home and I'm, and I'm still doing it, I'm still living with it. And so for other people it's easier to deal with than it is for me obviously, because I've still got it and I'm always going to have it and I used to feel that it was, I wish that I could do that. I wished that I could go home and put it away, put it to the side and just not have it and so that was quite difficult to get through. I don't really know how I got through that actually, that was I used to go through those feelings when I'd had my hip done because I used to see, people would come and see me and, and they'd be happy and they'd be, you know, keeping me up but I could tell that they were sort of a little bit frightened for me and obviously sad for me that I was in, it wasn't really pain it was just discomfort. And, I used to think I wish I could do, do what they're doing at home and put it away and not have to deal with it.

People also described how the effects of RA on their adult lives and how they coped with it. Cooking was often difficult because kettles and pans were too heavy, taps hard to turn, shelves too high or too low, and jars impossible to open.

People adapted their kitchens in many ways to make life easier. For example, a woman of 52 said that she had bought lightweight china, a microwave and special gadgets such as jar and bottle openers. Another said that it helped to lower the work surface. She had placed ordinary stools around the place so that she could 'perch' while cooking.

Equipment in the kitchen I've got left, right and centre, you know I've invested in that and as long as it's in a place where I can get hold of then I'm okay. So I've got liquidisers, magi-mixers and tin openers and knives that are easier to hold, which is a thing for me it's chef's knives, you know trying to get hold of a quality knife that sits in your hand, so what I used to do at one point was sit there and just put string, normal parcel string around it and pad them out with that, because I found that was more secure than putting, some people used to put the lagging stuff off pipes and used to put that and attach that, but I found that used to slip round so string used to really tighten up onto the handle after a while and that was good.

Wooden spoons are great because you can use them for, for switching things on and off with, you know, there's always a wooden spoon lying around somewhere that I had to get to a plug socket and, or reach something.

Yeah, you get used to adapting things, you know and it's getting, the thing I would do differently in the kitchen would be to have a surface which is lower, so if you're working, like mixing something you're not having to move your shoulders up to bring, you're uncomfortable so if you're working a little bit lower I find it's better to even bend your back a little bit rather than to have the sensation of stretching your upper body, and seating, it's having those, I don't particularly like the what do you call them there's a particular type of perching stool because I find I trip over the legs of those more than I would, it's just the position of the legs of the chair, so I would rather have a normal stool, that I've got that I picked up from a flea market somewhere, and I've got stools around the place that I just, can perch against.

Some people had bought special utensils with padded handles, such as Good Grips. Others stored their food and equipment in cupboards at a suitable level so that they didn't have to bend too low or stretch up high. One woman raised her washing machine off the ground to make it easier to use.

Many found housework such as vacuuming difficult, and had to ask for help from family members or social services (see 'Sources of support').

Ironing was also difficult. One woman did it in 'short bursts', while another wore splints to support her wrists while she ironed, vacuumed and used the telephone. (See 'Occupational therapy'.)

People adapted their houses in other ways. Some put up extra stair rails, or added ramps to doorways, or altered baths, showers and lavatory seats to make them safer and easier to use. One man had a stair lift installed. He also got help from the council to build a shower and a downstairs lavatory. The need to make adaptations is gradual and one partner said this made it easier to cope with the required changes.

Yes, I can cope fairly well around the home, I think, we've lived here for 3 years and we've redone most of the rooms and we put in a whole new shower room, for instance, so that I could have a level access shower. That was a big problem, I, I can't get in and out of the bath and a shower's OK but the sill and the base of the shower are, a difficult, a normal shower, it's difficult to, to actually step in. In the last house, it became very difficult to get over, actually into the shower because of the height of the base of the shower tray.

So we had the shower here taken out and a completely level access one put in. And a nice shower that's easy for me to turn on and off, that's the other thing. There's a lot of showers, particularly with the plastic controls that are difficult to actually to, to turn, and a door that will open easily and taps that are easy to turn and things like that. So, so all that side of things is, is nice and easy for me.

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Profile Info

Age at interview:

65

Sex:

Male

Age at diagnosis:

54

Background:

Retired miner and HGV driver. Married with 3 adult children. Family history of RA.

In a lot of ways that I can do things now which I wouldn't have had a hope of doing then, I couldn't even get out of the chair on my own, I fell down the stairs on 4 different occasions and I had a stair lift installed but now I can climb up the stairs unaided.

That's good. You say you had a stair lift installed, that's quite a sort of major thing to have?

Yes, yes

Were there, were there other things that you needed to do round the house?

I couldn't get in and out of the bath so I had that taken out and I had a shower installed. I had an upstairs toilet and by the time it took me to get up the stairs I was having little accidents so between the social services and the council they installed me a downstairs toilet as well which has solved all them other problems.

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Profile Info

Sex:

Male

Background:

Partner' Educationalist (full time), married with three children.

Yes, I will because I think had this been a road accident and there had been massive changes overnight then I think your adjustment is overnight and the facilities and resources that you utilise within a domestic environment would have to be a radical change whereas I think you learn to cope with a changing scenario that this disease presents to you in terms of the utilities that you may use around the house, my wife can cope at the moment with the stairs but we do realise that either we're gonna move to a bungalow one day or to install a stair-lift and it's the resources around the house that may need modification eventually we, you cope.

You learn to cope on a daily basis and you adjust that coping and capability very slowly because the dis' the effect of the disease is not immediate but you get to a point then when you realise that you are going to have to change, you know we're considering when we change the bathroom considering the height of the toilet [to raise that level so that you know it's not quite so low to get on and off the toilet, that we replace the bath with a shower, or that we put a shower cubicle along side the bath, so there's some independence there and the way that you would come into the house, we've made an extra entrance to the house with a less severe stepping in and also better access to the garden so that we, you know, we can share and do all the things around the house that, you know, we always wanted to do. But the, it's a gradual change not a step change. It's that, that ramping that we talked about.

Some people moved from a house into a bungalow so that they didn't have to cope with stairs, making life much easier.

Many bought higher beds so that they could get in and out of them more easily. One woman recommended a pocket sprung mattress and a sheep skin for better sleeping.

For some people we interviewed dressing and personal care can be a problem. One woman had had to change her entire wardrobe. Many people recommended light, loose clothes that fastened at the front, perhaps with Velcro, and elastic waistbands. One woman said her dressing stick with a wire hook on the end was invaluable. Others used gadgets such as long-handled hair brushes.

Yes. I preferred anything that I could just you know slip into, anything getting over my head 'cos I didn't have the you know,you get up in the morning, get dressed, you go, me, I just get up, get up and go, kind of thing, you know. But I did find that I'd I would have to get up earlier so I'd have enough time to get myself dressed prop, you know and buttons, I found buttons really awkward. So I tend to wear a lot of things that didn't just didn't require you know, tracksuit bottoms you just pull 'em on kind of thing. You know shirts that I could just pull over my head. So, yeah, I actually thinking about it I didn't realise how much it really, it really did affect me 'cos it just hits everything, all aspects of your life. You know, yeah it does, it just, so that that period I had to change everything.

People said that they needed fairly flat, easily fastened, comfortable shoes. Some used long-handled shoe horns.

Shopping more frequently for smaller quantities of food was easier for some people. They took care not to make the bags too heavy, to get help from others and to use home delivery services. Some people used the Internet to do their shopping.

Gardening was also a common problem. Heavy work such as digging was usually impossible, but some people could do light work, especially if beds were raised.

One woman recommended using children's tools. She had a light plastic watering can and worked on window boxes that were at a suitable height. She got in touch with the Gardening for Disabled Trust, which was most helpful it offers advice, financial and practical help.

I find that there's a great organisation called The Disabled Gardening Trust, they're based in Surrey, wonderful people and I can't tell you how I got in touch with them, it such a, many years ago, because what it was, we walked into a blank canvas here and I love tinkering around anyway and everything was in pots and that's a good thing, even if you just have, I love my terracotta pots, but of course they're heavy and everything, but God yeah it's, so what I did I wrote off to various people and organisations saying 'I've got the ideas but I need somebody to be able to implement them for me.

There was no way I could go out there with a spade and shovel and structurally alter the garden', so I got in touch with the Gardening for Disabled Trust and they were lovely, really good, good with information, good with help, suggestions whatever and out of the blue this telephone conversation happened with an organisation, a company round here and he said, 'We understand that you'd like your garden overhauled and would you be interested in us coming in and using it as a team building exercise'. 'Yes, come in [laughs]. The more the merrier we'll soon sort'.

So they came across and they, we had these drawings that both my partner and I had done and yeah, they were here each weekend for a month and they struct, they did what we wanted and with the support of the Trust and it was just wonderful, great. So I would say to people, look up, you know if you can't do something yourself, I know there's voluntary, volunteers and Trusts in, in the locality and there might be somebody, I never, I've found it since, I'm sure it happens within our area, there might be a retired gent who would be only too happy to come in and give you a hand and assist in doing it up.

I've got a couple of friends at the moment who are wanting to do their gardens and I'm trying to see if they can sort of, if its something we can set up ourselves, some volunteers can go in and do like a Ground Force thing, it would be great, be really good because people still want to be doing their garden, but they won't be able to manage it at the moment but they can have, we did raised beds, we put those in.

Do it quite simply with some log roll if you can afford it, get some nice brick ones, or sleepers are very good, but you're not going to be able to do it yourself, you need the muscle power to come in. We've reduced the size of the lawn, and through the summer what I do is, instead of mowing the whole lawn, its, we've made a pattern so it's like a spiral effect, it takes you five minutes and it's done, but, so the grass is then going to get the spiral and you've got the daisies and everything else in it and it just looks really nice.

People also found it hard to do their own house repairs. One woman said that she liked to do her own decorating but that it had to be done slowly. Others said that they no longer tackled big jobs and had to pay someone to do the work.

Many people felt better in a hot, dry climate, though heat made one man's condition worse. For some people holidays were not easy to organise because they worried about a sudden flare up, being too far from their doctors, and staying in places where there might be steps or unsuitable bathrooms. Young people when traveling or planning to live abroad tend to focus in finding information about healthcare provisions in the country of destination. Air travel was often straightforward as help if needed, was available at the airport (see 'Mobility, driving and transport').

Oh I had my first holiday last year. I went, only because I was a bit worried about, well I only do two and a half hours, there's only a two and half hour flight so that enabled me to not be sitting for so long but I did move around on the plane and but that did me really good because of the sunshine. But that was the first year from five years ago that I'd had a holiday because I didn't feel confident enough to go away. I was a bit worried about being away from home and the sort of the safeness of knowing that you're specialist is there or your doctor's there and you know if you go away you lose that, you lose that. But hopefully I hope to go away this year as well for a week. But I don't do longer than a week because I don't want to be too far away.

Many people said that they enjoyed holidays as long as they didn't walk too far, used wheel chairs and asked for help when necessary. One young woman said that she is more independent and has done more traveling than her 'healthy' friends.